My Journey

I recently went to OHSU to see my specialist Dr. Heinrich as well to attend this year G.C.R.F grant presentation to OHSU for gist research. I had a MRI and blood work and than waited until the next day to get the results. I was able to keep my focus on new friends and spending time with some old friends with Gist. We had a nice dinner with everyone and than breakfast the next morning with the research lab employees and doctors. I had my appointment at 3 pm so the day was long. When my husband and I got to see the doctors we were both ready to hear the news of my recent scan and blood work. Dr. Heinrich told me that all looked good with no new growth and that once again what my local radiologist had not known what he was seeing and what was thought to be growth was just the tumors breaking up and spreading out and dying. He said my blood work looked great as well but wanted me to have a iron test done due to a low iron count. He also wanted me to start having a CT scan due to it is better for his team to read the images from a CT scan and also to be able to see if another tumor might show up in pelvic as it has on other females with Gist. I ended up getting a CT scan the next day and another blood test for the iron. The drink has changed in the last 4 years and had no taste at all but since I do not have a stomach it was very hard to drink even half of that big cup of liquid. I only drank 3/4 of the cup of liquid and I can only hope that it was enough to get a good image of the whole area from abdominal to pelvic. I have not received the results yet from the the CT scan but my team at OHSU has not called me, so I will take it as good news. We also decided that Dr. Heinrich would be my primary doctor for my care but since I live 3 hours away that it would be best to have a oncologist near by who knows my case for my 3 month blood work, check up and if a emergency comes up. I have decided to keep my appointment with my oncologist in July and let him know my concerns on his treatment plan and to let him know that I will continue to see him every 3 months for blood work, check up and if needed for emergency but decided to rely on the experts for my scans and treatment. If he is not okay with my choice than I will seek some one in my area who will be on my team or just discuss with my family doctor about my situation to see if she might have some suggestion for me. I am feeling much more in control and at ease with my treatment and the best news is that I can go to a 6 month scan instead of every 3 months as I have been doing for the last 5 years. I can go into my summer break with no medical appointments and just enjoying my family and friends.

Posted on May 24th, 2010 by Tempest
Filed under: 1 | 2 Comments »

Well I called my local oncologist to see if they sent my recent scan and report to my specialist, I was told that they had not dictated the notes to send to my specialist, at the time of my call it had been 2 weeks since my appointment. Well I called OHSU  this week  and asked if they heard from my oncologist, and once again I was told that they had not received anything from my oncologist since January. I have decided that I am going to cancel my appointment with my local oncologist, since I have appointment with my specialist in May which I requested to schedule  a scan and blood work with him, and will see him the next day for the results. I am still going to reschedule to see my oncologist and discuss with him my concerns with his office and just how I feel about my treatment. I am prepared to start getting my full care at OHSU if needed because it is not worth the hassle of getting proper treatment for my rare cancer in my area. I  call the imaging center and I had them send the report and scan directly to my Specialist since my oncologist has not been able to send them the report. I also was told that my upcoming appointment with my oncologist on 11 of May was just to have blood work and see the doctor no scan schedule, which seems odd since I am showing growth with my tumors in the liver. Oh well just another month is the life of GIST…..

Posted on April 10th, 2010 by Tempest
Filed under: 1 | 1 Comment »

I am once again faced with a medical community that has no knowledge with Gist. I was informed that the MRI shows growth but than again they were unsure and have decide to do nothing at this time. I have decided to request that my care be given to the gist specialist in Oregon and not keep the local oncologist due to they will not go outside the box with my care and will not research or network with the specialist in Oregon. It has caused me stress and the feeling that no one cares.

Posted on March 27th, 2010 by Tempest
Filed under: 1 | No Comments »